Last week was all about data. On Tuesday, AMRC’s chief executive Sharmila was giving evidence to the Caldicott Review and on Wednesday we joined parliamentarians for the All-Party Parliamentary Group on Medical Research’s summer reception How data saves lives – Unlocking the research potential of information. Researchers involved in 16 fantastic projects joined funders and policy-makers to show MPs and peers how and why access to data helps them to do research.
If you couldn’t join us, do check out the programme which has summaries of all the research projects on show. Together these give a good overview of the different ways that data is used for medical research. The programme also has a really clear explanation of how and why data is accessed for research and some of the policy challenges we need to address to enable this to go ahead while making sure personal information about people’s health is protected.
Earl Howe, the health minister with responsibility for research, joined us to hear from three speakers who brought the subject alive:
Professor Nic Jones who is Cancer Research UK’s chief scientist explained how research using patient data has helped transform cancer treatments. He gave a great example of a study looking into flexi-scope bowel screening which found that this five-minute screening test has the potential to prevent a third of bowel cancer cases, as well as picking up the disease at an earlier stage. Putting these findings into practice means we can both saves lives and reduce costs associated with treating people with bowel cancer. More from him on Cancer Research UK’s blog.
John Savill, chief executive of the Medical Research Council outlined some of the regulatory challenges that need to be addressed to ensure this research can go ahead. Currently the regulatory framework is overly complex and urgently needs clarification. We have several opportunities to make a difference:
- European Data Protection legislation is being revised.
- The Health Research Authority has been set up and its role in the use of patient data will be debated as the Care and Support Bill passes through Parliament (the draft bill has just been published – more here).
- The Government has announced a consultation to be held on an ‘opt out’ agreement with patients to allow researchers access to their data.
- The Hargreaves Review of Intellectual Property and Growth has recommended an exception to copyright law for non-commercial research that would maximise the value of published material.
- The Caldicott Review is currently taking evidence on the use of patient data and will make recommendations shortly.
And we were joined by Antony Cox, who has Parkinson’s, who spoke about what supporting research means to him, and his views about the use of his data for research. The public tell us they want to be involved in research to improve healthcare, and they want opportunities to share their data to help achieve this – 80% of patients polled would like to be offered the opportunity to allow researchers access to their data. Antony really brought alive the issues and the real priorities and considerations for patients making decisions over how their personal information is used. I’m pasting Antony’s speech below; it’s well worth a read.
Parkinson’s is a neurological condition in which lack of dopamine in the brain leads to many problems, most notably movement. One person in every 500 has Parkinson’s. That’s about 127,000 people in the UK including me. The cause is not known nor is there a cure. Levodopa, the best drug available to control the symptoms has unpleasant side effects and only works for a few hours at a time.
Typically patients first presenting with Parkinson’s have already lost 70% of their dopamine production.
If Parkinson’s could be detected early enough the dopamine might be kept going for a lifetime.
From chatting to other people with Parkinson’s it would seem that years before we were diagnosed with the condition most of us lost our sense of smell or began sweating excessively or had trouble with our eyesight. Parkinson’s UK has launched Tracking Parkinson’s to discover if there is an indicator or biomarker to pinpoint people who will get Parkinson’s years ahead.
Without a reliable biomarker we cannot diagnose Parkinson’s accurately or measure how it progresses, which is a massive barrier to testing new treatments.
Opening NHS patient data for researchers would speed the quest for biomarkers for all conditions.
Television and the press do their best to frighten everyone with stories of personal data that has gone missing or been misused. The public on the other hand is perhaps not so worried.
The Parkinson’s Voice Initiative at the Massachusetts Institute of Technology is collecting data by asking those with and without Parkinson’s to leave recordings of their voices in a telephone call. The objective is to find an early indicator for the condition from these voice records alone. The Parkinson’s Voice Initiative has had an unprecedented response and reached 35% of its 6-month data collection target in just 3 days. It demonstrates that people are more than happy to contribute data. This is something that the NHS needs to understand if we are to make progress on the difficult public health and funding issues that we all face.
I can’t be the only person whose actual fear of information being revealed has nothing to do with computers. I’ve had a nightmare in which a young person on work experience behind the desk in my crowded GP’s waiting room says very loudly “Mr. Cox, the Erectile Dysfunction Nurse is ready for you now.”
Supplying NHS data should result in winners all round; patients may enjoy a cure or partial recovery; the community at large should see a reduction in the high cost of medication, and parliamentarians will enjoy the credit for making it possible.